Following on from my previous post (not sure if I should have started new or just added to last one, if admin want to let me know)
Anyway, I went to my appointment and had my jab as I had an ampoule with me but have been told I will no longer be given B12 injections. When I asked why, i was told my b12 serum is above 1000 and my intrinsic factor is negative. When I mentioned that my b12 should be high and the IF could be a false negative, she just wouldn't really listen. Again she went on about how I shouldn't have been getting them every 8 weeks anyway as the guidelines state 12 weekly and wouldn't budge on this matter. I explained I had been put to 8 weeks as I was suffering brain fog and pins and needles in hands and feet which start after about 7 weeks after injections and get worse the longer it is until I get injection.
I asked why I have been getting the injections for all these years and being told I have PA and then told that I haven't as PA doesn't go away. She said that the Intrinsic Factor test was not available years ago and that is why they are testing everyone now.
I mentioned again to her that I was put on B12 injections 19 years ago after being diagnosed with Crohns and was told I would be on injections for life, she was really quite rude and said "Oh Crohns!" (as if it was an excuse for me to get the jab) I said there are problems with B12 absorption and Crohns, she just said "Well i can put it to the Doctor" so I just said ... Yeah, put it to the doctor.
She took my blood pressure, which was sky high, and now I have to monitor it twice daily and take results back to her next week.
So it looks like I will be having to write to them and try my best to get my injections reinstated.
Thanks
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lfc4eva
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This was a nurse at your practice not a doctor? I would write to the practice manager/doctor obviously this nurse has issues with people with B12 , and has no idea regarding all the issues you raised.
Yes it was a nurse, she pulled up a flow chart on the computer to show me that the regulations are for every 3 months not 2. I just said there is a lot of info I could bring up on the computer too x
Good for you !Years ago I had a nurse who always use to say people are always complaining they need injections more frequently, I just ignored her comments. I wrote to the Doctors to get mine reinstated. After reading what I had gone through the Doctor rang me and asked how often I would like them.
Trouble is they look at you and on the surface you look fine, but in reality they cant see the nerves jumping around in side your body or that to survive you retire to your bed. It's not living is it ?
I realise that this has been mentioned before by another forum member on another posting; but if you can find the information in your patient records about being diagnosed with Crohn's disease and that you were told that you need to have B12 injections for life. That will show as evidence of your condition and could possibly help getting your injections sorted back to how they were.
Some surgery's use Patient Access (there are other online GP services) and you have to register via the surgery. Then you can see your patient information/records often including blood test results (though some surgery's restrict what you can see.) Also I don't know how long this information would go back for with your diagnosis being 19 years ago.
But I've certainly found this a really helpful thing to do.
I have patient Access but like you said, most information is restricted. I have asked them to look back and all I've been told is we can't see anything or we can't see that far back.
If the world was normal again and I got to go see my crohns consultant then it may be different but with consultations being over the phone for the last however long it's been ...it's just not the same....seems to be barriers everywhere x
Yes that's typical...though I've just thought if you were diagnosed by a hospital consultant could you contact the hospital department concerned and get the information that way direct from them?
Even with it being a while back it might be worth a try?
I have recently down loaded a NHS app , and found I could go back and read all the consultations that I’ve had since 1993 .So that’s nearly 30 years . It’s a different app to the one we could download to trace covid infection . .That might be useful for you .
Thanks, i've got the app and it goes back to 1994 but there is no date as to when i started on injections, only in repeat meds is there any mention of Hydroxocobalamin and thats from 2019 which is when i was moved to 2 monthly.
I didn't have to upload any photo, it was very straight forward, I didn't have to contact my surgery either, i think I just clicked on something that said 'get information from your doctors'...or something like that. Did you have your nhs number?
Yes. Have NHS number. I neded phoyo ID . All accepted and got through to access . All I coukd see was prescriptions and allergies tgrn told to contact surgery. I'm not online there ?
That's all i can see on mine too... prescriptions and allergies and under allergies none recorded... even though I have a huge list and on very strong antihistamines daily?? Sorry can't be of much help. I think you can request a copy of your medical history but it has to be done officially. Hopefully someone on here has done this and can let us know the next steps to take.
I've got that app, but will we be able to see if we have moved house? I have online access at the surgery going back to 2002 when we moved here. I did write to get my records when I was in hospital in 96/97 and they came by email - all 522 pages of it! I would like to see previous records though to see if I had untreated B12 or thyroid.
Since only 40-60% of those with pernicious anaemia test positive for intrinsic factor antibodies, it follows that a negative test result cannot be used to stop B12 injections. If your B12 frequency was altered to an injection every 8 weeks, based I'm assuming entirely on return of symptoms, then this is still following professional guidelines. It is also what one would hope every GP would do: believe a patient's own account and then attempt to find an injection frequency that would prevent, if possible, a regular deterioration for that particular individual. It would be unkind not to at least try.
Even if it could be proven that you did not have PA, you still had a B12 deficiency for which no alternative cause has even been offered. So you still need a diagnosis.
It can hardly be worth this amount of effort: for what cause ? To weed out those patients who are imagined to be having B12 injections for no real reason at all ? Who in their right minds...
Well that can't be you, can it, if the GP upped your frequency based on return of symptoms ?
What happens if they are wrong - does everyone have to deteriorate back to their original B12 reading before they will be treated again ? What if they test a few times and then refuse to test again or refuse to accept test results from private testing labs ? What if symptoms become irreversible ? This approach has been very poorly thought through.
I did not respond to B12 injections when found to be B12 deficient. I got worse.
My GP had my MMA tested. My B12 was above 2000 ng/L - but my MMA was raised.
Because she had ruled out any renal problems first, the lab confirmed that I had functional B12 deficiency. She contacted consultants for treatment advice - and I was given B12 injections twice a week. No need to see her again, this was to continue until I could get no more improvement, and then one injection a month for life.
As you can imagine, the nurses had had no previous experience of a patient requiring more than the 1 injection every 3 months regime they were comfortable with. Some were highly suspicious:
I was asked by one nurse "Did you ask for these -or did a consultant advise them ?"
Another kept going on about my "poor arms" - even though I'd told her that I hadn't ever felt a single injection and always had to ask if they were finished with me yet, as I couldn't tell if I'd been injected or not. She kept trying to get me to go back to the doctor.
Another one, when I asked her why the others were being so weird, admitted that she'd Googled "B12 and toxicity" to check that she wasn't going to kill me (fair enough) - and was reassured by what she found. All that came up was how B12 is used in cases of toxicity- as a detox method !
When I did go back to the GP, she was really happy that I'd obviously improved, so much so that this frequency should continue. She even said she'd talk to the nurses !
It took about 3 months on this frequency before I could actually feel that I was being injected - a wonderful day.
I now self-inject at the same frequency - and have done for several years.
I'm fine - not completely as before, but okay. My latest blood test results (last November) were the best since this started six years ago and my MMA finally went back within range after three years.
Nurses, whatever their previous experience has been, have to follow the GP's lead on treatment frequency. If you are feeling either bullied or triaged by them, involve a GP.
Perhaps the one who increased your B12 frequency to 8 weeks ?
A good GP can save your life. By that I don't mean one who knows all there is to know about B12 deficiency. I mean one who cares enough to find out what to do to stop you getting worse.
Thanks for your very detailed reply, all info is really appreciated. The doc that did put me onto 8 weekly in 2019 was the same doc that told me later during the beginning of the pandemic that everyone is going on to tablets for PA. I'm pretty sure he has left the practice now, the last few docs i've spoken to have all been different, never get to see the same doc twice, which again makes things more difficult.
Yes - how do they know what you are like at your best/worst if they've never seen you before ? How can they make observations when they can't observe you anyway ? Getting difficult to get good care.
Write to the GP Practise Manager. Give a brief synopsis of your medical hostory inlcuding the GP who increased your b12 injection frequency. And state what happened with the NURSE saying you feel there must be some misunderstanding on the nurses side. Express your serious concerns of the consequences of withdrawing essential b12 injections by the practise. Ask for the injections to be reinstated and an explanation. Explain how critical the b12 injevtions are to your health and well being and your concern that withdrawel will cause you harm. State you would like your letter to be put on your medical notes. Give a specified time period within for them to respond.....usually that 2-3weeks. I would copy your consultant in with a cc and their name at the bottom of the letter. Keep it polite but formal.
Whether you were diagnosed yesterday or nineteen years ago is not relevant and a nurse has no right to withdraw long term medication like that!
Thanks for your reply. Yes, I think writing is the way to move on. I'm not the greatest letter writer so will prob take me a while to do. When you say send a copy to consultant, do you mean the crohns consultant from the hospital?
Yes to the Chrohns consultant. Chrohns is linked to deficiencies so sm sure he/she wont be super impressed by the withdrawel of a vital vitamin like B12 after so many years by a nurse! It will also make the GP surgery be on their toes as the GP Practise are not specialists in the field of Chrohns. Might be worth ringing the consultants secretary and asking to speak to the consultant. I really feel for you & its disgraceful the nurse has done this!
Generally people don't revisit old posts so good to start a new one - though you can refer people back to the old one using a link if you want.Sorry you are having to deal with someone who really doesn't seem to know much about B12 deficiency - it is very difficult when people obviously haven't looked at the detail behind things.
8 weeks is the correct frequency as you have neurological symptoms and that can be checked against the BNF if she wants to confirm.
Years ago there was a test for PA called the schilling test but it needs radioactive cobalt and is no longer done. What we have now is IFAB but that isn't a good test - it is highly specific (doesn't give false positives - unless done too close to an injection) but it isn't very sensitive and gives false negatives 40-60% of the time so a negative really doesn't rule out PA - if she wants to check that then it is in the details of testing provided by the BCSH and detailed in these guidelines
The insensitivity is such that the standards refer to IFAB-negative PA as a consequence. The standards also contain some protocols for deciding the cause of a B12 deficiency in light of the lack of a highly specific and highly sensitive test.
I had slot of problems bringing g refused b12 injections ad tgdyvwete every other day for months. I had 2 sit ins until the nurses spoke to the doctor. They queried slit. It git tiresome as at the time I wasnt t convjncex myself as I got alotcworses before any improvements.
I noticed my prescription changed to when required rather thsn stipulating a time span. It the mires say 8 weekly a day early and the buses is not covered to do it. Continuity with a gp is vital.
The regular nurses were okay as hot usedvto ne going more often. Thrn they both left .
I eventually got a prescription yk self inject.
Keep your letter short.
Book a telephone consult after so they csn see your scanned on letter.
I nearly gave up as bought done online. Thrn Gp rang.
So keep going yo get what yiu need. Its good on your notes.
Had to fight gir my mum too.
Its usually bad record keeping.
A gp not reading bnf guidelines or indeed using clinical judgement.
In any letter or conversation with GP may be worth drawing their attention to the increased risk of permanent neurological damage including damage to spinal cord if B12 deficiency is untreated or under treated. This might make them take more notice of you.
Each CCG/Health Board in UK will have its own local guidelines on treatment/diagnosis of B12 deficiency. Worth tracking down local guidelines for your area of UK and comparing them UK guidelines/articles below.
Search forum posts for "local guidelines" as some of them have been posted on the forum. Try an internet search or submit a FOI (Freedom of Information) request to CCG/Health Board asking for a copy of local guidelines.
I've written some very detailed replies in the threads below which may have B12 info you will find useful eg causes of B12 deficiency, books, articles, more UK B12 documents, B12 websites along with a few hints about managing unhelpful GPs.
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